Decades of research have established that genetics influence the development of eating disorders. Twin studies have shown that eating disorders are 1.5 times more heritable than depression, with just over half of the risk being a result of complex genetic factors. EDGI UK now wants to uncover more about how genetics and the environment can contribute to eating disorders. This is where you come in!
The Eating Disorders Genetics Initiative (EDGI) UK is the UK’s largest ever research project into eating disorders. The aim is to collect the psychological, medical, and genetic information of 10,000 people with lifetime experience of any eating disorder(s). This will help us to better understand the role our genes and environment play in the development and treatment of these illnesses. EDGI UK is part of an international collaboration, with many countries coming together as part of EDGI World. More details of the study can be found in our protocol paper here.
EDGI UK can only reach their goal with your support – they need thousands of participants to contribute to this cause. Every single person counts. You can sign up or get more information on their website.
There are four steps to joining EDGI UK*:
*Please note you do not need to have received a diagnosis or treatment in order to take part, and you do not need to tell your healthcare provider (all your information is confidential and packaging is discreet and free)
A deeper understanding of eating disorders means we will be better equipped to help those who are experiencing these illnesses. EDGI UK is also creating an important resource that enables the efficient recontact of volunteers for further research. For too long, eating disorders have been stigmatised by society, underrepresented in mental health research, and overlooked by research funding bodies. Together with your help, EDGI UK wants to change this.
In October 2021, EDGI UK released a new report which found that eating disorders are just as likely to start in adulthood as childhood. Specifically, over half of people with eating disorders first experience symptoms of binge eating or low weight as adults, while over 39% of people first recognise bulimia symptoms over the age of 18.
You can read the full 'Age of Onset' report here.
Davies and colleagues (2023) released a new paper investigating whether mania symptoms are related to symptoms of binge eating disorder. They compared those with and without experience of binge eating and found that people who experienced binge eating were significantly more likely to have symptoms of mania than those who did not experience binge eating. This research suggests that mania symptoms may be more strongly linked to binge eating as a behaviour, rather than binge-eating disorders.
You can read the full paper, “The network structure of mania symptoms differs between people with and without binge eating”, here.
Absolutely! EDGI UK is recruiting anyone who has ever experienced any eating disorder, whether this is in the past or something you are currently experiencing. You do NOT need to have received a diagnosis or treatment to take part, however you must be over the age of 16 and live in England. Sign up through their website at edgiuk.org. After you complete their online sign-up survey, if you are eligible, they will send you a DNA saliva kit for you to send back to them.
Due to their ethics and current funding restraints, EDGI UK is only able to recruit in England for the time being. They hope to be able to expand to the rest of the UK in the near future.
Eating disorders deserve a lot more attention in government initiatives. Write to your local MP to demand increased funding for eating disorder research!
It is a difficult task to disentangle the influence of the environment from that of genetics. When genetically influenced traits in parents (e.g., genetic predisposition to an eating disorder) influences the environment a child is in (e.g., a parent showing signs of an eating disorder), this results in what is known as ‘passive gene-environment correlation’. We are able to work through this complex question through different methods, such as twin studies and genome-wide association studies (GWAS). Twin studies observe how often a set of identical twins (sharing 100% DNA) compared to fraternal twins (sharing 50% of their DNA) have the same condition in order to identify how heritable a trait, or disorder is. A GWAS involves looking at thousands of people’s complete sets of DNA (which all have a particular condition), and detecting common genetic variations.
Yes, all mental health disorders are influenced by both the environment and genetic factors. The level of genetic influence varies between different behaviours and disorders. You can learn more about the genetic and environmental influences on eating disorders by clicking here to watch a video.
In short, we do not know yet! The only eating disorder which has been studied at the genetic level so far is anorexia nervosa. More research is needed to understand the genetics of all eating disorders. The team at EDGI UK are building a biobank of data to allow researchers to investigate how genetics influences eating disorders and the relationship between them.
To our knowledge, there have been no studies looking at the connection between genetics and tendency to view pro ana content.
Anorexia nervosa has long been seen as a psychiatric condition. However, research published by the creators of EDGI UK found that the genetic factors that are associated with Anorexia influence physical activity and overlap with metabolic (including glycemic, lipids and body measurements) that are not due to genetic effects that influence the BMI. For a full overview, we recommend reading the blog post written by the lead of EDGI in the USA.
Yes, this is one of the aims of the study - to look at how different eating disorders are genetically related or if they are completely distinct from each other. Most of the current studies on eating disorders, particularly in genetics, have focused on anorexia nervosa. EDGI UK are looking to recruit more people with eating disorders including atypical eating disorders, bulimia nervosa, ARFID and binge-eating disorder in order to better understand the genetic underpinnings of these conditions.
Whilst ARFID is a common eating disorder, particularly in children, it is under-researched. EDGI UK are recruiting those who have experienced ARFID, whether that’s in the past or currently, regardless of whether a diagnosis has been received. To learn more about genetics specifically, a large number of people will need to participate and donate their genetic data. We are excited about the research that this will enable.